Down Syndrome Diagnosis Network: #ShareTheLove

Have you ever said bad things after calling an automated customer service line? Swearing, maybe? Throwing objects, maybe? It is like being in an M.C. Esher painting, isn’t it? Who knows if you’re going forward or back, up or down.

M.C. Escher – Relativity

I felt like that after we found out about my son’s Down syndrome. In the Pit of Google, I found simultaneously too much and not enough information. Medical risks, inclusion, therapy, advocacy, there was so much, yet it felt like trying to use an automated customer service line. I’d go to one website, get bounced to another, and half a dozen clicks later, I’d somehow be in the same place I’d started, confused as ever. All the while, I could yell and I could cry, but nothing changed. Websites don’t have social skills.

Then there were things well beyond the factual aspects of raising a child with Down syndrome. Trying to understand those slippery parts of love and acceptance through the lens of Down syndrome was mystifying. During those first days, I felt like I was winding my way through endless permutations of ill-fitting choices.

I was not getting very far. I craved the nuance of a real human being.

Then I had a bit of luck. I made connections, in person and online. Those first interactions were not easy but they were crucial. I found parents who were like me not only because they had children with Down syndrome, but because I could relate to them in a broader way. They spoke my language. I had a template in which to fit the reality of disability into my parenting experience. Living, breathing human beings held out their hands to me. People made time in their lives to see me, call me, message me.

In that first year I experienced a sense of community that took my breath away. Cards and care packages went across states and even across countries. Strangers became friends through advocacy and activism. Gains were celebrated by all, loss was felt by all.

I have watched countless other parents experience what I did. Yet, what about the ones who don’t find those right connections and support? What about those who did not have the luck to stumble across the right people, the right organizations?

One of our greatest hopes at the Down Syndrome Diagnosis Network (DSDN) is to take the variability out of the diagnosis equation. The disability community has created so much, but not all are able to find what they need. All parents should find reliable, current information. All parents should find real-life connections. All parents should find a community that helps foster inclusion and acceptance for their child.

DSDN’s support network has been growing by leaps and bounds. Our small support groups add a layer of intimacy and connection that is hard to find elsewhere. Our Rockin’ parent groups are also endlessly flexible. Some parents choose to observe, some are vocal. Some parents find each other locally, some remain online. Some parents find like-minded friendships, while some find themselves in unexpected pairings, all equally wonderful.

DSDN’s Rockin’ Family support groups have grown from 1 to 12, reaching 1,500 new families around the world. Our support groups are growing at a rate of 500-600 parents a year—equivalent to nearly 10% of children born with Down syndrome in the United States each year.

Welcome: A basket to our new families with helpful information and a message of congratulations, possibility, and encouragement.

Support: Cards and care packages for children undergoing surgery or having extended NICU stays to remind parents they’re not alone.

Commemorate: Bereavement gifts for parents who have lost a child with Down syndrome.

Empower: Scholarships and stipends for parents to attend Down syndrome related classes, conferences, and events.

Here are some things from parents who have already been touched by DSDN’s support.

“I absolutely love my windchimes! Every time I hear the wind making that beautiful music, it not only reminds me of our sweet baby boy, it also reminds me of the Rockin’ moms group and that someone out there cares that we lost our precious little Jamie and how special he was.” ~Julie, mother of Jamie

“The care package received from my DSDN family was wonderful! It let me know that I wasn’t facing my baby’s challenges alone. The chocolate made me smile and helped me relax during a very difficult time.” ~Jennifer, mother to Bella

“I was 25 weeks pregnant and visiting Las Vegas for work when I went into labor. Four days later, my daughter Zoe was born, at 2 lb 2 oz. Having a baby in the NICU and being so far from home was harrowing. When I had received Zoe’s prenatal diagnosis of Trisomy 21, there were so many things I didn’t yet know. Like the sound of her giggle, or how much she loves to snuggle. Another huge thing I didn’t know was the tremendous love and support that comes from the Down Syndrome community. When I was struggling in Las Vegas, they were there for me. All of the cards and care packages from afar blew me away. The Rockin’ mom care package was so incredibly thoughtful, filled with things like healthy snacks, a Tide stick, dollar bills for vending machines… Clearly from moms who had been there and understood. Even more so, the heartfelt love and support that came with it blew me away. I’ll never forget it.” ~Jamie, mother to Zoe

“My care package was a lifeline. It meant the world to me. Suddenly I didn’t feel so lost. I was connected to a family, a community, a group of giving and caring people who were there for me when I needed them.” ~Jennifer, mother to Emilee

DONATE: Click here to donate. Any amount will help support a new family.

REACH OUT: Help us create partnerships. If you know of an individual or company who may benefit from sponsoring the DSDN Rockin’ Family Fund, get in touch.

SPREAD THE WORD: Share this post, along with your own words. If you have had good experiences within the community, consider sharing them as paying it forward. If you have had poor experiences, consider sharing them as an act of education. Feel free to comment below—you never know who you will reach. #ShareTheLove

I felt so grateful that our NICU social worker gave our information to the Rocky Mountain Down Syndrome Association (the closest group to us at the time.) They sent us a welcome package with great, helpful information. (And a tiny newborn outfit!) I believe the Down Syndrome Guild of Greater Kansas City (our current support group) does the same. It’s such a relief to feel like you’re connected with people who REALLY KNOW what you’re going through.